Lilah HOPE walks more

Please watch the entire thing. The end is the best. Lilah is showing her TRUE self in this video:

What determination, desire, FIGHT, and even a little naughty side.

Go Lilah, GO!

Thank you, Jesus for THIS miracle!

I. Am. A. WALKER!

For all that said she could NOT do it.... Here is some PROOF that

Philippians 4:13 "I can do ALL things through HIM who gives me strength."

and Matthew 19:26 " Nothing is impossible with God"

Are true!!

MIRACLES!!!

Good Morning singing and love with Lilah Hope

Best way to wake up in the morning. God is working hard in my precious gift.

Lilah singing Twinkle Twinkle and ABCs

She is amazing!! Isn't she?!!

Thank you, God, for EVERY thing you have taught me (and will teach me) through her.

God is SO good!!

Different, yet very much the same

This morning I read an email from a woman with a son with the same deletion as Lilah. I read her email and at first I was SO excited that not only the link(that allows others to find Lilah and her deletion) worked, but that she wasn't alone.

Joyce also sent me a link to a study done in Spain about 8 other children with the same Chromosome 8 deletion. When I read the STUDY (click on the word study to read) I began to cry. Then, hysterically cry. Each term described her to a perfect T.

Why am I crying so hard?

I am not really sure.

Maybe that I stayed so strong during Lilah's IEP when the labels and terms started coming out all over again. Maybe that during that IEP I sat there, alone, with 5 "professionals" telling me all about my child and I smiled, stayed strong, fought for her, got her the services she needed, but I was alone in my fight. Maybe that I have been fighting, ALONE, for so long. Maybe that reading each one of those "lists" gets overwhelming. Maybe that sometimes I just NEED to cry.

I am not really sure.

Right now my emotions are just all over the board...

• so glad there is more information
• dislike the labels
• need labels to get her the services she needs
• I shouldn't feel sad. I should know it is just words that are listed on a study
• this is Lilah. She is low toned. She has corneal opacities. She is delayed intellectually....

I don't want to react with tears. I want to react with a sense of "thank God" for the information.

But, there is a part of me that would LOVE to be "normal" sometimes.

**Please, for those of you reading this that do not have a child like mine, or if you do and you have been in "Holland" longer than me, please do not tell me how to feel, that my thoughts and emotions are wrong. I am, yes, allowing you all into my brain to see what it feels like and know that this journey that is so beautiful... does have days where you are quite sad. I am human. I am a very transparent person, but also...this website is my journal...my place to give my words and thoughts to God and allow HIM to work in those places of pain and heal me. I am following HIS call by being open with you all. Please don't bash my heart...for I wear it on my sleeve and it is bruises easily. Thank you**

Yes, I would like to be "normal." I would love to walk into Wal-Mart without people screaming at me through their car window for me to "move faster, pick her up, ugh" because I am allowing my child to "walk" slowly holding my hand from the handicapped spot to the door for more therapy.(yes, that did happen 2 weeks ago and the woman teaches at the school where my girls attended last year....another reason I home school...I don't want people like that teaching my children about patience, love, acceptance, etc when they obviously have none themselves(yes, that teacher was always like that in the school)) I would love to be asked to go to play groups and have the other Moms talk to me. I would love to be invited to events where Lilah can attend and not have people invite us because they feel sorry for us. Then, I wonder, is it really just me? Am I the only one that feels this way? Is there something wrong with me? or am I just having a rough couple of days and tomorrow will be better and I will have a new perspective?

I pray that the latter of all of this is true...

That the truth really is....this is just a moment of VERY honest, real, open feelings and that I cannot be strong every minute of every day. I still love my child...JUST as she is. I am still a VERY faithful follower of Jesus. I am just broken today.

This I know...

somewhere after I have bawled like a baby and asked God why again and told HIM how much it hurts...somewhere...somehow... I have FAITH...

HE will restore my heart and make all things new and HE will allow me to "see" better than I do today.

Right now, I have opaque corneas.

Right now I am at a loss of how to make it all work. Right now my house is a mess, I am covered in laundry, Lilah's paperwork is all over, my home school closet needs to be organized, I have 13 sessions to edit....and I am re-living each moment of the last 3 years.

I know how far she has come. I know that God isn't finished with her...or me yet. I know that this is just one day.

I need this cry. I need to give it all to God. I need HIM to come and remind me of truths.

And even when I am alone in this world....I am not alone because HE is always with me. Jesus will never forsake me. This truth I know...even as I sit and bawl and ask HIM why again.

Jeremiah 29:11

Uncertainties

In just a few days time Lilah will have her 3rd MRI.

This MRI will be brain, thoracic, and lumbar. Last year the MRI showed that her spine was not tethered but that she has an additional lumbar vertebrae. The MRI was to show if she would need surgery on her spine.

Dr. Thompson (neurosurgeon) wants to repeat the spinal portion to verify the additional L6. He is concerned that there is something missing...as am I. See, Lilah drags her right foot a LOT when walking with her walker. She also isn't potty trained and for a child with her disabilities and at age 3...there is a concern that the spinal cord really is tethered. Tethered spinal cord could hinder her ability to feel and understand when she needs and has to use the potty. This would mean Lilah would need surgery on her spine to UN-tether the cord. ( yes she could be delayed in potty training due to her lack of understanding and more but tethering could make her incontinent)

Dr. Moretz( Neurologist) wants the brain portion repeated to verify that the issues with Lilah's grey matter have not increased. If you remember there was finding that Lilah has a small corpus callosum and that her grey matter didn't form correctly. This could mean that somewhere Lilah had brain damage or that her brain just didn't develop like it "should" have.

Because Lilah has steadily improved we haven't been too concerned, BUT Moretz feels that yearly MRI's on the brain are imperative due to the brain and eyes working so closely together and because of Lilah's significant delays.

Here are my concerns and requests for prayer and discernment:

* If Lilah's cord is tethered she will require surgery on her spine to UN-tether it

* I have heard many different views on Dr. Thompson's surgery practices, things he misses, etc

* If she needs surgery there is a chance that her walking could be halted...forever. Risks to spinal injury

* If the MRI shows that Lilah has brain has damage...questions arise as to where and when it happened. In utero? At birth? Did she not get proper oxygen at birth? Was there something that should have been reported? What about when she came out and had trouble breathing? Did that cause her damage?

I am laying it all at God's feet. I do not know the plans HE has for Lilah. I must trust Him to know what the path is. I am her Mama and I am fearful of the unknowns for her. I want the best for her. If she must have surgery on her spine I want the BEST person operating on her. I will go to the ends of the earth to find the person she is meant to have operate on her. If this is just another test then I will do my ultimate best to trust in His leading me here to teach me something.

I am requesting prayer. I believe that prayer either changes things, the circumstance or our perspective on it.

I keep begging God to heal her spine, her legs, her brain, her eyes, but I also know that HE has led us to this place to help us all grow. I pray that Lilah will not need surgery, but if she does...that the right hands will operate on her and she will NOT have complications. I pray that she will be able to walk and she will not have injury that will cause her walking to cease forever. I pray that the brain MRI shows that she does not have damage and that there is no growth or increase problems in the ventricles.

I know that all of this must lay in HIS hands. I must trust that all will work out. I will keep praying and believing....and still being human.

Thank you to those who can help me understand all the medical ins and outs, who will guide me correctly, will pray for us, who will hold my hand as I hit weak moments and cry hysterically. I need you all. I appreciate you.

Much Love and Many thanks,

Katie

Happy 3rd Birthday Lilah!

Three years ago today an angel was sent to earth. I had no idea what a blessing I was holding in my arms with her surprise pregnancy, birth, and diagnosis. I was the blind one. I was so scared, sad, shocked, mad hurt that no "test" told us our child was different. The ONE sent her to me and I was questioning HIM why.

3 years later, many tears shed, many battles fought and won, some lost and thankfully I have a VERY different perspective on Lilah, the experience, and her gift.

You know, it really is true. What you think will break you, only makes you stronger. But honestly, I needed MY eyes opened. I knew that Jesus loves us so completely, so perfectly, but there was SO much I was missing. Lilah has shined HIS light in my life...in MANY lives.

What our "world" considers beautiful isn't what God looks at. He looks at our heart. He digs deep into your soul and sees the little girl who was hurt so long ago and knows she needs an angel to help her really see how GREAT and VAST HIS love is. So, HE allows you to walk through the valley. He allows you to be stripped and broken from everything this world has and HE helps you to understand that we "walk by FAITH, not by sight."
He shows you that you not only have courage, strength, love, kindness, abilities, but that you are BEAUTIFUL in HIS eyes.
You may not see HIS blessing right away and you may lay your head and cry. THAT is OK, HE knows what HE has planned for you and HE knows that once you can REALLY see...you will understand why and you will be more thankful to HIM for that storm and valley than you could ever know. You will then look back and wished you would have trusted the entire time and had HIS joy close, but don't worry...HE is not mad or disappointed. No, no, no...quite the contrary. Jesus is crying tears of JOY because YOU finally see. YOU finally feel HIM like HE has always wanted.
HE will do ANYTHING to make us see HIM. And if we are too blinded by our own past, failures, anger, pride, hurt, the LIES we have believed from Satan all of our lives...well, HE will find whatever way HE can to help you understand how deeply HE loves you...like NO one else can.

THIS is what Jesus has done for me with Lilah. I have always been a believer. For as long as I can remember. I cannot even remember a time when I didn't pray or believe HE existed. I have believed...but I didn't really understand it. Today, I not only understand...I feel HIS presence. I see HIM working in others lives and I am just in AWE of Him.

I spent way, way, way TOO long being sad. Not just about Lilah, but about everything horrible that had happened to me. I was allowing Satan to rip and rob me and hold me in such chains. I was missing the JOY I so desperately desired. I blamed others, made choices that I should NEVER have made, did and said things that I wished I hadn't because I was so hurt by the lies Satan was telling me.

Today, I am free. I am free because I really get it. I cannot begin to even start where and how it all happened, but I will try. Lilah was sent to me, and that broke me...even farther than I already was. Then last October I was asked to go on the Walk to Emmaus. (Life changing!!) I couldn't help but see and feel and understand HIS love. The women from my walk helped me SEE and FEEL Him. A few months later, I took the Captivating Study at SCC where one of the ladies from my walk, Barbara leads it. If you are a woman reading this, please....I beg you..PLEASE click on the word Captivating and buy this book. PLEASE! If you live in the Savannah, Ga area...go to the study that Barbara Feemster leads at SCC. YOU will NOT regret it!

I met some wonderful women and I shared such personal things that even those who know me closest probably don't really know the truth. Then, I found it...I found the place where the lies began and I allowed Jesus WAY down to that VERY dark and hidden place and I let HIM in. I allowed HIM to heal what was broken in ME...and then...I could finally see.

At first I began to have guilt about not seeing HIS presence in it all, but then I remembered that is NOT what HE wants. So, I let GO and....I began to live.

And today, this is how I see myself and I see Lilah ....
Lilah,

YOU have changed me. God sent you to me to change this broken heart. HE knew that you were not just going to change me...but so many. Look at what you do to people! You light up the room and bring a smile to their face.
God is using YOU to help us see what a mess we are without HIM and only HE can fix us.
YOU are here to shine HIS light and help us all see with HIS eyes. Lilah, I love everything about you. I love your heart, your laughter, your eyes, your beauty, your giggles, your FIGHT, your perseverance, your WILL. I am in AWE of you. I don't even have enough words to tell you how deep my love is for you.
Your strength has taught me SO much about myself. I have done things that I never, ever would have done. YOU, Lilah Hope, are the strongest woman I know.
I am so thankful for what Jesus has done in you physically, but I am in tears at what He has used YOU to do with me emotionally. YOU were sent to heal me. I see my worth now. I am trying things that I never would have before you. I watch you fight at therapy and I know I must fight even harder. I am learning so much from you, my sweet girl. Your song couldn't be anymore truer than it is today.

"...sent from Heaven to me"

Lilah, thank you for the last 3 years. Thank you for each moment. Thank you for changing me. Thank you for smiling. Thank you for loving me even when I didn't understand. Thank you for teaching us. Thank you for showing me peace and joy. Thank you for healing us.

I love you SO much. I thank Jesus for you...every moment, of everyday.

Happy 3rd Birthday Lilah Hope Sharp!

To Brandon Heath,

When Lilah was born almost three years ago, the Dr. that diagnosed her eyes said that, "God didn't make these eyes right."

I actually believed his curse. I couldn't hear God's truth.

Listening to Brandon Heath's "Give me your eyes" I remember begging God to give Lilah HIS eyes so she could see. I would cry hours at a time. I couldn't see that God sent Lilah to me to open my eyes.

3 years later I have very different eyes.

I see the blessing that is Lilah Hope Sharp. I see the blessing in my home and now know that I am called to share HIS grace with you all.

Aaron and I were very blessed to not only go on the music boat, but I was able to have a conversation with Brandon Heath and his Dad. I was able to tell Brandon how "Give me your eyes" has ministered to me in many different ways over the last three years.

Brandon,

Thank you for your music which has inspired this Mama Bear more than you could ever know. Thank you for sharing God's word through song. Thank you for allowing all of us to see that HIS eyes are not of this world and that we are made for HIS work. Sharing my testimony and Lilah's story with you blessed me to speak those words back out. Thank you for not only listening, but for being humble enough to see that you really helped me and my family.

Keep on singing!

God Bless,

Katie

I ran a MARATHON!

Do you remember me telling you that I was training to run my first marathon(26.2 miles) for Lilah? Do you remember me telling you about my fear for that race? Probably not. I was nervous. I was scared to put my feet to the pavement and actually run 26.2 miles.

My sweet friend, Melissa, who ran my first 5K and first 1/2 marathon(13.1) drove from D.C. to run with me. We had been writing, Facebooking, and calling each other to keep up and help each other stay accountable.

On November 5, 2011 at 3:30 am I woke up and got ready for the marathon. I prayed, I drank my coffee, and I asked God to lead me as I ran these miles for my girl. I also wrote names of people I wanted to pray for on my left forearm. I kept myself focused on them as I ran.

I will tell you the truth. As someone who ran her first 5K 18 months ago, then her first 10K, then her first half marathon. The marathon was one of the hardest things I have ever done.

We started the race at a great pace. It was cool almost FREEZING. But, that was great. It enabled us to get into a pretty steady rhythm without burning out too fast. At mile 7 I heard my name and there was my friend, Lauren with her husband Chase and their children cheering us on. I lifted my hand up and signed, "I love you" and kept running. Thank you, Durrence Family for cheering us on!

At mile 11.6 the half-marathoners parted to the right and we went up the on-ramp to continue on. At about 13 miles we saw the winner on the other side of the highway on his last few miles. (little did we know the torture that was waiting for us at that exact point)

Melissa will be the first to tell you that I cried a LOT during this race. At mile 18 I felt as if I was a failure. I was hitting the wall. My shoe laces were tied too tight and I had to stop and loosen them. We had just past Heather, Lilah's speech therapist, who had come out to cheer us on. Thank you, Heather, for showing me your face and cheering me on!

At mile 23 I had to walk...a lot more than I wanted. That mile was hard we were running on the on-ramp to the Truman Parkway into a strong headwind....this was the torture I was talking about.

At mile 25 my friend, Liz, who ran my first half marathon with me and Melissa, and trained many miles with me...was working the water station. She cried and hugged us and I just couldn't speak. I was SO emotional. So full of pain, fear, ready to see my family. I was too full of emotions to even utter a sound or a smile, but I did cry as I hugged her.

With every ounce of my being I started back into a slow run...then I heard his voice...

there he was, my sweet husband, with my camera, calling out my name, and Melissa pointed....

(here we are about .2 from the finish line)

as I ran past him I began to cry as I held up my sign, "I LOVE YOU" to my husband.
at this point I heard him say, "Lilah's down there." I began to cry harder. I looked through the sea of people and then I saw her, and Alex, Sammie, and Eli...with my Mom, my friend, Rachel and there was Heather, Lilah's Speech therapist, too.
Here I am with my muse, my inspiration, my HOPE after crossing 26.2 miles for her.

Hugging my Mom as I held my miracle was a very emotional moment.

And here we are "Team HOPE" with our inspiration. We did it! 26.2 miles!
(you can see the names on my arm. if you look close. of all of those people I prayed for)

Melissa,

I cannot even begin to thank you enough for what you have encouraged me to do...

You coached me through my first 5K, encouraged me to run my first half-marathon, then agreed to run a full marathon with me. I know I wanted to give up a LOT. I know I am not the easiest person to run with. What you have done with me, and for me, and for my girl...priceless. You gave me confidence and courage to finish...and we did it holding hands. Many times you could have completed this race in such a faster time than we did. Many times you could have given up on me, and I am sure you wanted to. Thank you for coming back to me and pushing me to fight.

I love you. I am grateful to you....more than you will ever know.
Much love and many thanks!

Katie

And here I am stretching post-race...medal on...and my sweet girl crawling to me.
This was written on my leg and many people commented as we ran the last few hard miles. Many people said, "YES! I can do all things though HIM who gives me strength."
I am proof that this verse is true. 18m ago I ran my first 5K in 39minutes, then my first 10K in 61minutes, my first half-marathon in 2:26:00 and then I completed my first full marathon in 4:50:20. ( my goal was not to run for over 5 hours and we made it in under 5...to me, that is huge )

I want you all to know that when you put Jesus as the center of your life, you CAN do anything. Have you ever heard of Team Hoyt? A very disabled child asked his father, via typing, to run a marathon for him...this father trained and trained and eventually ran an Ironman pushing and pulling his disabled adult son. His son asked and his father responded...and showed his son...I CAN!

Lilah hasn't asked me to run, but I run for her because I see her fight at therapy. I see her fear. I use that as inspiration for me to push myself harder and faster then I ever thought I could. I run because Lilah cannot at this stage of her life. But, I CAN. I want Lilah to know that her Mama was fighting just as hard as she was...and I was scared too. When the day comes and Lilah tells me that I have no idea how hard it is, I will tell her she is right. I don't have any idea. But, I did do hard things for her and I didn't give up...even when I wanted to. I want her to know that her Mama was fighting just as hard and just as tired and just as exhausted. I want her to see that I was there...right there....never giving up HOPE.

The most BEAUTIFUL flower girl...EVER!

On September 3, 2011 I received an email from this wonderful woman: Morgan. (Here she is right before she walked down the isle)

The email said this:

"We only have a few people standing in our wedding and these are people we are very close with and support us. But I always want to include people that inspire me on my special day. That is why, I would like to ask you if Lilah would be the flower girl in our wedding. She will not have to stand up at the front the entire time, and you or her sisters can hold her hands and walk with her down the aisle. But when I'm envisioning my special day, and all the obstacles ahead of me, I immediately think of the strength and child like faith of Lilah. And I can think of no greater honor than to have her be a part of a day I will never forget."

This beautiful woman of God made me cry and my heart skip a beat. I immediately said yes and knew God would find a way to get Lilah down the isle.

Did I mention I had never met her in person before? That she had read this website and we were friends on Facebook and are fellow Savannah Christian Church members? My heart immediately thought, "I don't know who this woman is, but the fact that she wants my angel in her wedding speaks volumes about her as an individual."
The little stinker was SO cute at the rehearsal. She was so full of life and love...as always!
Here are a couple of images of Morgan and Lilah on her special day....
Lilah fell in LOVE with Brian, Morgan's life-long friend. Brian melted my heart as he paid such sweet attention to Lilah.
Lilah was so happy that day. She was radiating God's love!
I think she looks like a doll in the next image. ( thank you to my friend, and client, Amanda Byrd, for loaning us this INCREDIBLE dress!)
Can't you just see God's love in her face?!
I told Aaron that I didn't think Lilah would walk if I put her on her walker and walked off, but I did think if he put her on, she would walk forward to me. Here is the only image I got of her walking down the isle.

She tried to give up. She sat down, fought Aaron and cried, but she finally put her hands on her walker and made her way to me up front.

When she got there...
the congregation clapped. Needless to say, the above image is the ONLY one I have of that moment because my eyes were SO filed with tears that I couldn't see.

After Morgan and Glenn said their vows they had Pastors and people who have influenced them on their walk with Christ come forward and lay hands on them and pray. This was one of the most BEAUTIFUL moments I have EVER witnessed at a wedding.
Here she is, walking back down the isle to her Mama. I cannot begin to tell you how very proud of her I am. This was one of the GREATEST days of my life. ( Thank you Aaron for capturing this! I will have this image in my mind as I run for her on Saturday)
We had so much fun dancing at their wedding. This image will be repeated one day..I just know it. I know that the Lord has a man planned to LOVE Lilah JUST as she is. Someday Aaron will dance with his daughter on her own special day.
LOVED seeing her dance with her Daddy! Warmed my heart So much. ALL Dads should dance with their daughters!

My Mom came to see Lilah walk down the isle...and we had a blast dancing with the flower girl!

Dancing hand in hand with Lilah was one of the most heart warming moments of my life!
Even Eli twirled Sammie on the dance floor.

I cannot begin to tell you how PROUD I am of Lilah. She tried to quit. She tried not to walk down that isle, but she didn't give up. She did it...
and as Glenn said just after the ceremony, "We are here to make God famous and she shines HIS light."

Yes, I cried MANY happy tears that day.

Congratulations to Morgan and Glenn.

Thank you for including Lilah on your special day.

Almost time..

Quietly I rise each morning and lace my shoes and go outside and run. Before the sun, before my family wakes, I am running. Many mornings I have been running for hours while most of you sleep.

In 8 days, on November 5, 2011, I will be running my first full marathon. 26.2 miles. Yes, you read that number correctly.

18months ago I ran my very first 5K. I was a nervous wreck. I had never run a race before. But, my cousin's wife had just gone to heaven and I wanted to run for her and how hard she fought breast cancer. I was also running for Lilah. I wanted her to see that her Mommy tackled a big fear and tried something very new and scary. My friend, Melissa, ran it with me. She ran slightly in front of me. She turned around every few minutes and told me I was almost there. Then, right before the finish line, she slowed up and watched me cross the finish line. The race photos showed her cheering me on from behind. I will NEVER forget that moment!

That night at church, she asked me to run the Princess Half Marathon with her. I told her she had lost her mind because I had just completed 3 miles and thought I would die. She told me I had months to train.

I did. On February 27, 2010 we dressed in tutus and tiaras and ran 13.1 miles through Disney World with our black tank tops embroidered with HOPE. We were running for Lilah. At the finish line Aaron held Lilah up so I could find my family. I cried with Liz and Melissa as we crossed the line.

One more time I am lacing my shoes and running for my girl. And this time, even more than the last, I am more nervous. I sit here with ice packs on my knees resting my overworked body as I type this. I sit typing with hands trembling as I realize what I am about to do for my child. For my family.

I want my children to see that their Mama was dedicated. She didn't give up. She didn't give in to the pain and fear. She was determined to cross that line on her feet.

Melissa and I talked the other day and her words brought me to tears. She said, "Katie Sharp (she always calls me by my full name) , I don't run 26 miles for just anyone. I am running this race with you...for her." Tears streamed down my face as I listened to her.

One more time, team HOPE will be running together. We will be in those same black tank tops embroidered with HOPE.

God has given me this child for a reason and a purpose.

I just laid her down for her nap. As I lay in her bed next to her. Her sweet little voice asking me to "SSSSSSS" for sing, I see the mighty GIFT that God has given me. This sweet soul has taught me SO many important lessons. She has taught me to fight for her, to fight for myself, to never give up. She has taught me that I have a purpose, that I have a gift and that I am here to spread the good news.

I am not a "strong" person. I am not superwoman. I am not different than any of you. I draw my strength from Jesus. I credit HIM and HIM alone for all of this. For everything.

I know that those of you reading this are wondering how I am finding such joy in each moment when months ago, not too long ago, I was still stuck in SO much grief.

John 9:3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."

I didn't see then what I finally do today. Lilah has changed us all. She has made us closer to Jesus. She has made us realize that we CANNOT do this by ourselves. We cannot do this on our own power and strength. Lilah was sent to me to teach me that I can do ALL things through HIM...and you can too.

Did I ever think I would be running a full marathon? NO WAY!!! Did I ever think I would be running for hours? NOPE!

But, I also never saw myself as the mother to a child with needs. I never saw myself as the person who would put her foot down and say what she needed. I never saw myself as Jesus' child. I thought that HIS grace was for everyone BUT me. Boy was I wrong. HE came to save us ALL. HE is inviting us to a life of freedom and grace. All we have to do is reach our hand back out to HIS that has been there all along and accept HIS offer.

Do you remember me telling you earlier in this post how Melissa watched me cross that finish line and cheered me on? She did for me what I have been doing for Lilah. I have been cheering her on to walk, talk, grow and learn.

In 8 days I will be drawing strength from Jesus as I run 26.2 miles. When I cross that line, and YES I will, it will be one of the most emotional moments of my life.

I will have done something that I never thought I would EVER do.

May I ask you to pray for me, Melissa,the other runners, and the people that I am quietly praying for as I run 26.2 miles for HOPE.

Philippians 4:13 is what I repeat as I run my long runs in practice. And this will be what I recite as the miles increase and I want to quit:

"I can do ALL things through HIM who gives me strength!"

Lilah's Laugh

Her sweet laugh is so contagious. This is sure to brighten your day. I'm not sure why it uploaded this way, but at least you get to hear her giggles!

She is SUCH a blessing!

Strength

To me, this image speaks VOLUMES about her perseverance, strength, and progress.

The Lord has really blessed us!

I am SO cute!

Don't you agree?!

WALKED

Slowly we have been trying to help Lilah gain confidence by walking with our hands. Then we have gotten her to walk with just one. Side by side we walk...and I LOVE these moments.

Tonight as we decided to take a family walk down the street. I asked Aaron is he would take a picture of her as we walked by one of her signs. Little did I know what God had waiting for me.

45 minutes after this picture was taken on my cell phone, we made our way back home and I slowly let go of her hand...

and ...

she did it!

Lilah Hope Sharp took 3 steps unassisted!!

Yes, you read correctly...my girl walked!

and yes, she was mad as all..you know what when she realized that she did it on her own...

But, that is JUST it...

She did it!!

And now that I know she can...Mama Bear will continue to push her so she CAN do more.

Nothing will hold her back!

Praise Jesus for THIS blessing!!

My special child from HIM

GOD GAVE ME A SPECIAL CHILD

God gave me a special child--

Softly, gently, meek and mild,

I was chosen by His grace--

To be the mom of a special face.

Little one so tender and true--

How my heart beats with love for you!

I love you forever just as you are--

You are my little shining star.

Different you are, different you’ll stay--

God made you special,

He loves you that way.

When challenges come as you grow old--

May God give me strength to be so bold,

Fearless, not helpless, but in Him I trust--

I am your mother, care for you I must.

Gladly I will for the rest of my days--

The Lord knows his plans for all my ways.

I made a vow which I will fulfill--

To care for you always,

And always I will.

God really is working in her life

Yesterday while her older sisters were in dance class, we practiced some one-handed walking. What you are about to see was taken with the camera on my phone. Please watch. Not only did her big brother reach his hand out for her, help her, but Lilah walked holding one of my hands on many different textures. This video speaks volumes about God, HIS miracles, and his love.

Thank you for continuing to pray for our family. Our sweet Lilah is doing HIS work daily.

Many Thanks

In our home prayer is something that we do with our children frequently throughout the day. We believe that prayer changes things.

Sometimes the circumstances change for God is a great God and He listens and answers our prayers.

Sometimes our perspective changes and we see things MUCH more clearly than we did before.

Sometimes we get a YES and a miracle occurs. Sometimes we get a No and we must understand that the No comes not because we are being punished, have done something wrong, or haven't done all we could. Sometimes the NO comes because we cannot see the bigger picture that God has planned for us in this life and the next.

Prayer helps us focus on HIM and find joy in all situations.

I will be the first one to tell you that MANY of my prayers have been answered...many miracles have occurred. But, MANY of my prayers have not been answered.

What I do not know is that God has a plan greater than my eyes can see. Sometimes I tell people that Lilah can see more than me. For she is joyous in almost all circumstances.

The Lord sent her to me, and my family, and those of you reading this...to teach us. He sent her so we would realize how precious life is, how we should take nothing for granted, how no matter how much we "try" to control the situation...it is always out of our hands.

Lilah Sharp, I am grateful for you. I am grateful for each and every moment I get to spend with you. Even those that pain me. When I am stripped of all that I can control in your life, God teaches me to rest solely in HIS grip. When there are no answers and I want to scream and shout...I must turn my eyes on HIM and focus on what HE is doing with us. He is using us to help lead others to Him. I never asked to be a "witness." I never asked to bear the cross of such pain, and watch daily as my child struggles. But, neither did Jesus.

HE didn't ask to be born with the intention to die for you and me...for all of us. But, HE knew that HE had a purpose and that God had a plan. So, He prayed and asked God to take the cup from Him if it be thy will. Well, the cup wasn't removed. He took the punishment for all of us. He took it so we could find freedom in HIS name.

I may not always see that Jesus is using us. I may not always want to be used. But, I believe we are here, together, for a great purpose. Thank you for teaching me daily.

I love you more than you will ever know.

My sweet Lilah Bird!

Thank you for the constant prayers, love, and support.

We love you all!

Lilah Talking and singing and signing

Please watch this and you will see how far she has really come. We thank you for all the love, support, and prayers. We cherish them more than you know!

More info on her Chromosome 8 Deletion

After I begged for help, many of you forwarded this website, asked friends and family and kept the word going.

THANK YOU!!!

A friend of mine sent it to a friend of his who is in genetics. Some of this email makes my head spin, because I don't quite understand it, but some of it makes me understand my girl more.

Will,

I would definitely ask for a referral from one of Lilah's physicians to see a geneticist at Emory. Lilah's mother's feelings about this situation are completely warranted and normal. Genetics referrals can take time as well because there are not many geneticists in the state of Georgia. I don't know how much Lilah's mom understands about her test results, but basically Lilah is missing a section of chromosome 8 in everyone of her cells. The test is called a chromosome microarray test, and its purpose is to identify extra or missing pieces of chromosome. Chromosomes have two arms called "p" and "q" and the "q" in 8q21.11 tells us that the deleted section is missing from the q arm of chromosome 8. The numbers following the "q" in the description of the missing section of chromosome 8 describe the section's location on chromosome 8, similar to a map. I have personally seen multiple children in the pediatric genetics clinic in Arkansas who have had the chromosome microarray test. Sometimes this test allows geneticists to give a name to a condition and other times all we know is what genetic material is missing. Lilah's case seems to be the later, or in other words there are probably few, if any, individuals with the same exact deletion as Lilah. I did a quick search of the national medical database, and came up with multiple similar case reports but nothing that was exactly the same as her deletion. The geneticist at Emory could help make sure that Lilah gets all the appropriate care she requires, and will continue to follow up with her. Hope this helps.

Jacob

So, we do not have specific answers, but as I have guessed, and sometimes worried about.... it looks like Lilah is the first case documented.

I mentioned this to Dr. Sutherland, the cardiologist in Atlanta, and he said what Joey, Lilah's GaPines rep says too...Lilah may be the first case, but because I am putting all the information out there, I will help pave the way for other families who encounter this deletion. Not exactly what I had hoped for Lilah, but I suppose this is the path God has chosen for my very outgoing, outspoken, loud, tell-it-like-it-is self. Maybe God really is using me and Lilah in more ways than we could ever imagine.

Thank you for helping me...ALL of you. I will not quit. I will not give up. I will continue to fight, and fight, and fight...because that is who I am...I am Lilah's Mama.

Atlanta trip for Cardiologist and Post-op visit

Tuesday Morning Aaron and I were dreading the 11 hour drive that was in front of us the next day. We were so tired from work, home school, therapies, doctors...life that we actually began to think we should take money from savings and purchase tickets to fly to Atlanta. Well, God's timing is ALWAYS perfect...

Just minutes before we pressed the "purchase" button, Angel Flight called...

We had a flight!

A sweet man named Winn Baker had volunteered his time and his plane to take us to Atlanta for Lilah's appointments.

Wednesday morning arrived and I got up way too early. Nervous, scared, anxious, overcome with emotions, my brain woke me up at 3 am. I tried to go back to sleep. I wrapped myself up in the Prayer Shawl that SCC had given us. I was just too anxious. So, I got up and made my coffee and started doing laundry and talking to God. Before I knew it, I hadn't even gone for my run and it was getting close to time to wake the kids. I put my clothes on, tied my laces and ran before the sun. I just gave it all to God, and asked Him to help me to trust Him with today...as all days.

I came home, jumped in the shower, and hurried to get the kids dressed.

My sweet friend, Melanie C, offered to watch Alex, Sammie, and Eli for us while we were in Atlanta. THANK YOU, Melanie!!

Once we had the kids settled at Melanie's, we made our way through the Gulfstream traffic to Signature airport where we met Mr. Baker. He escorted us to his plane and Lilah and I made ourselves comfortable in the back while Aaron rode up front with Mr. Baker.

I, of all people, forgot my camera, so the images and video you see are taken from my phone.

Me and Lilah at take-off!

We went through a few rain storms, several clouds, some bumps, and the most beautiful rainbows.

Two rainbows! That is a promise from God (remember that verse in the Bible?!)

The left side of the plane was dark with the rainbows and the right side....

Beautiful!

God sure does paint us some gorgeous pictures, doesn't He?!!

Once we landed, we took a taxi to Sibley Heart Center at Children's Healthcare of Atlanta (Scottish Rite)

The first test they did was the ECG. (Electrocardiogram) Lilah cried when they placed the electrodes on her chest, but began smiling when they blew bubbles. Her favorite!

We spent almost an hour trying to find the "strips" from Lilah's surgery where the arrhythmia's were present. The nurse practitioner couldn't find the strips, so they decided to go ahead and do the ECHO cardiogram. This is an ultrasound of the heart. They look at each chamber's function and watch how her heart works.
Lilah's PDA(Patent Ductus Arteriosis) has closed. YAY! But, now she has an PFO(Patent Foram Ovale) She has a small hole in the atrial septum of her heart. 15% of us walk arounfd with this and have no idea. We also learned that they believe Lilah has PVCs (premature ventricular contractions) when she is at rest. Basically, when Lilah goes to sleep her heart beats differently than it would when she is awake. But otherwise, a "normal" functioning heart.

This is the theory. To confirm this, Lilah had a 24 hour heart monitor attached to her before we left Atlanta. The results of this will be determined once we send the monitor back, via UPS, tomorrow morning. The Cardiologist, Dr. Sutherland(SWEET man!!) will then go over all of it and let us know what his final outcome is.

Then we had about a 35 minute break. Our friends, Jennifer and Jason Reyes, picked us up and we ate a very quick bite at Chic Fil A before heading to Lilah's post-op appointment. Thank you Jenn and Jason for coming to meet us and spending a very quick trip with us! Miss you guys!

Next we went to Dr. Greenberg's office. He was very pleased with Lilah's positioning of her eye. He wants to see her back in January. I am to continue the patching....5 hours a day.He filled out the forms for her PSI(pre-school intervention) evaluation and we discussed what "legally blind" would be like in a "classroom" setting for her.

I remember when those words would sting me so bad, but you know...time has taught me, along with her other delays and needs, that some sight is better than no sight.

We called for the taxi and headed back to the airport to meet Mr. Baker.

Taking off...

and a little cat nap...
Mr. Baker flying the plane with Aaron next to him
We made it home JUST in time to go to SCC where we praised Jesus for His faithfulness and we helped our church family write scripture on the floors of the new elementary wing before the completion of construction...

Romans 15:13

Luke 7:22

Proverbs 3:5

The BEST part of Wednesday, was during the ECHO... CHOA(Children's Healthcare of Atlanta) is AMAZING! Seriously, Savannah could learn a LOT from them. During her ECHO, Lilah looked at the lights from the drop ceiling above. I went over and over the colors with her. Then, God spoke through my girl....watch this video and hear what happened...

That's right...

Lilah SAID, "purple, blue, orange, red, bubbles" and more...

Jesus spoke that day...and I heard Him in my baby girl, my miracle, my Lilah!